The final item of business is a members’ business debate on motion S4M-09430, in the name of Nanette Milne, on self-management of anticoagulation therapy. The debate will be concluded without any question being put.
Motion debated,
That the Parliament considers that there is a lack of progress in patient self-testing and self-monitoring in Scotland compared with England and the rest of Europe; understands that, while Yorkhill Royal Hospital for Sick Children in Glasgow provides an excellent service for children and young people on anticoagulants in terms of providing them with the equipment and the training to self-test and self-manage their conditions, when transitioning to adult care these patients are unable to continue to self-manage, leading to only 40 of 16,000 adult patients in the Greater Glasgow area, or ¼ of a percent of the total, being able to self-manage; understands that this is a common occurrence across Scotland; considers that, despite evidence that self-management of anticoagulation therapy provides patients with better health outcomes while remaining cost effective, there is still a general reticence across Scotland to help patients who want to self-manage to take control of their own care; notes what it considers the lack of implementation of the Scottish Intercollegiate Guidelines Network (SIGN) 129 guidance promoting self-management and that this inactivity runs contrary to the NHS 2020 vision of “A focus on prevention, anticipation and supported self-management ... with the person at the centre of all decisions”, and notes calls for the Scottish Government to implement a national service delivery model to ensure that NHS boards support those patients across Scotland, including the north east, who want to self-manage their condition with the training and skills to do so.
17:03
I am sure that we all know that, to ensure the efficacy and safety of anticoagulant therapy, which is usually given orally as warfarin, regular monitoring is essential to ensure that its effect stays within the therapeutic range. The dosage is adjusted according to the time that it takes for a blood sample to clot. Because serious complications can occur if warfarin is poorly controlled, it is vital for patient welfare that the clotting time is checked frequently. Traditionally, of course, that has been done through hospital-based anticoagulant clinics.
I first brought the issue of self-monitoring and self-management of anticoagulation therapy to the Parliament in 2010, because it appeared to me to be a cost-effective and beneficial way of enabling appropriate patients to be partners in their care, in line with the Government policy of encouraging self-monitoring and self-management of long-term conditions, when that can be done appropriately and safely.
At that time, Scotland lagged behind England and the rest of Europe, and that remains the situation today. Only 1 per cent of patients on warfarin in Scotland self-manage their treatment, whereas across the UK as a whole the figure is 2 per cent. Approximately 740 people in Scotland self-monitor out of 25,000 in the UK, but 70,000 people in Germany do so.
NHS boards in Scotland generally do not provide support for self-monitoring or self-management of anticoagulation therapy; for example, in NHS Greater Glasgow and Clyde only 40 adults self-manage, which is a quarter of 1 per cent of the 16,000 patients on the treatment, whereas there is very good provision in Yorkhill hospital for paediatric patients to self-manage. Unfortunately, as children in that area who can self-manage reach the age of transition to adult services, they have to return their monitors and go back to attending clinics for treatment. In fact, only three health boards in Scotland have protocols for self-management of transitional patients.
In my own region, NHS Tayside actively discourages patient self-monitoring, or PSM, and I am told that it has even refused support when PSM was recommended to a patient by a consultant cardiologist. NHS Grampian as yet gives no formal support, with the development of a protocol for self-monitoring being delayed due to a lack of enthusiasm for it from the various parties that need to be involved.
However, there is growing support for change and there are pockets of best practice in Scotland. A good example is Largs medical group, which is actively supporting 13 people to self-test through its active self-management service. Increasingly, there are drivers for change. For example, Scottish intercollegiate guidelines network guideline 129, on antithrombotics, states:
“Self monitoring and self dosing is safe and effective and can be considered for some patients.”
The Royal College of Physicians of Edinburgh also encourages the use of self-management, stating:
“Anticoagulant control may be improved by near patient testing and engaging patients in their own care; patient education should be supported at every stage.”
NHS Scotland’s 2020 vision for the NHS emphasises a focus on prevention, anticipation and supporting self-management, with the person at the centre of all decisions. Finally, the National Institute for Health and Care Excellence’s draft guidance recommends self-monitoring for people on long-term anticoagulation therapy. The final report by NICE on self-testing systems is due to be published in July, with the expectation that self-testing will be increasingly supported in England and Wales, which could let Scotland slip even further behind.
Unfortunately, the greatest resistance to self-testing for those who wish it seems to come from general practitioners and clinicians, according to the Anticoagulation Self-Monitoring Alliance. That point was brought out in a round-table discussion last year on the potential for the self-monitoring of anticoagulation that was attended by senior clinicians and patient groups and which resulted in four recommendations: first, that SIGN guideline 129 should be supported; secondly, that a review of the uptake of appropriate technology in Scotland compared with that in England and the rest of Europe should be undertaken; thirdly, that a learning-needs assessment for clinicians, GPs and other healthcare professionals should be carried out; and, fourthly, that consideration should be given to setting up a national service delivery model for anticoagulation to encourage health boards to promote self-management to appropriate patients.
On cost-effectiveness, studies carried out by the NHS in mid-Yorkshire and by health economists in the University of York showed that the NHS in Scotland could be saved around £600,000 a year from the prevention of strokes through the improved control of anticoagulation achieved by self-monitoring patients. Furthermore, all the patients who took part in the mid-Yorkshire study agreed that self-testing had been beneficial and would recommend it to others.
In her response to my earlier members’ business debate on the issue, the then health secretary, Nicola Sturgeon, was somewhat lukewarm about the self-management of anticoagulation, given earlier clinical advice and the fact that newer anticoagulant agents might replace warfarin. However, warfarin is still the treatment of choice for many patients, and expert advice is changing. Indeed, replies from the current health secretary to some recent parliamentary questions from my colleague Richard Lyle show that the Scottish Government is now taking account of SIGN guideline 129. However, with a rate of self-monitoring in Scotland that is still less than 1 per cent, something does not add up.
The response from the Government to another question from Richard Lyle about what support is available to patients in transition from paediatric to adult services was that local protocols for the delivery of anticoagulation management vary across Scotland but are in line with SIGN guideline 129 and that, at the time of transition, on-going warfarin management, including self-testing, would be agreed as part of an overall plan of healthcare—clearly, that is not generally the case.
Understandably it has been put to me that there is a significant difference between the answers that were given to Richard Lyle and the reality on the ground, where little or nothing appears to be happening by way of implementation. I would welcome the minister’s comments on that when he sums up because the Government needs to do more to ensure that patients are given the option to self-manage than just saying that that is the case.
I will conclude my speech as I did my 2010 speech, because it is still relevant to do so, by urging the Government to look closely at how anticoagulant therapy is managed and to consider investigating the potential for increasing self-testing and self-management with a view to rolling it out across health boards to suitable patients, thus saving the NHS money and improving the quality of care for the large and increasing number of people in Scotland who need long-term anticoagulation therapy.
17:10
I am pleased to have the opportunity to speak in the debate. I begin by thanking Nanette Milne for securing debating time this evening.
Warfarin therapy is vital to lowering the risk of strokes, heart attacks and other serious problems that are associated with clots forming in the bloodstream and, possibly, thereafter travelling through it to cause serious damage to major organs. We also need to be aware that, although warfarin is a vital drug in the right amounts, it is important to get the balance right. As my colleague Nanette Milne has observed, creating the circumstances in which more people are able to manage their conditions is in line with the Scottish Government’s 2020 vision for NHS services.
In reading the background material for tonight’s debate, I asked myself why what is being advocated is not being more widely done now. The key test that must be applied to every possible new development is the extent to which it is safe and effective. Self-testing and self-management are standard practice for other long-term conditions, and I have often used the example of the telemedicine diabetes clinic at the Galloway community hospital in Stranraer, which uses Diasend technology, specialist nurses and secure videoconferencing to relieve patients of a very long round trip to see their consultant and give them back some flexibility in their day-to-day lives. I can certainly see at face value the benefits of similar approaches to blood testing for warfarin prescribing. In addition, there is evidence that supports the clinical effectiveness of near-patient testing and self-testing and, as is so often the case, it might well be that a mixture of approaches is the most effective.
I note from the information that has been circulated to members that although NHS Dumfries and Galloway does not have a patient self-monitoring protocol, it now advises that it will seek to support patient self-monitoring. I welcome that, especially given the distances that some patients in the region have to travel to access healthcare.
In that regard, I also want to mention the work that the digital health institute is doing on detection of atrial fibrillation using a device that can be used by a patient in their own home and can be purchased right now on Amazon. Atrial fibrillation is an important factor in identifying patients who are likely to benefit from use of anticoagulant drugs, so its detection and the subsequent use of anticoagulants are related. Indeed, in my view, this debate highlights questions that are crucial to the way in which we will need to deliver healthcare in the future, when technology is likely to enable patients to take a far more active role in managing long-term conditions with the advice and supervision of health professionals.
Central to all such developments must be the certainty that a testing, monitoring or treatment method is safe and appropriate, and that appropriate education and training are also provided. There must also be recognition that what works well for one patient might not be appropriate for someone else.
We have heard tonight of examples of patients for whom self-testing is clearly the right approach, and for whom it is working well. My colleague Nanette Milne cited the Largs medical group as an example of best practice, in which it has been found that by far the biggest benefit for patients is the flexibility of being able to test when they want to test. Patients should be supported in that, and the current guidance from Health Improvement Scotland recognises that there will be patients in just such situations.
I look forward to hearing the minister’s views, and I await with interest NICE’s final report on the effectiveness of self-testing, which is due to be published in July. Again I thank my colleague Nanette Milne for securing tonight’s debate, which is on the key issue of enabling people to be in charge of their own blood testing and monitoring.
17:14
I also start by congratulating Nanette Milne on securing the debate and on her thoughtful contribution. I simply observe to the minister that Nanette Milne is clearly persistent in her drive for change in the area, having had a previous debate on the issue. I have no doubt that we will return to it unless improvements are made.
In the UK, 1.25 million patients receive anticoagulation therapy, and the number is set to increase by as much as 10 to 20 per cent. It is estimated that there are 74,000 patients in Scotland, but that only 740 self-manage, so it is a tiny fraction, at 1 per cent of the total. In England, the figure is 2 per cent—approximately 25,000 people there are self-managing—and in Germany the number rises to 70,000. Self-testing is increasingly supported in England and Wales; the danger is that Scotland will fall even further behind. Aileen McLeod rightly said that we must ensure that treatment is safe and effective, but the numbers are increasing in England and Wales, so it has clearly been judged to be safe and effective for those patients.
NHS boards in Scotland generally do not provide support for self-monitoring, despite the fact that increasing numbers of patients might benefit from it. Nanette Milne rightly pointed out that only three health boards in Scotland have protocols for self-management. We should congratulate them on doing some work in the area, but there is clearly a need to do more, if we are to provide that opportunity for the population across Scotland.
There has been quite a lot of success in training young people to self-monitor and self-manage their anticoagulation therapy although, disappointingly, there is no support for them when they move to adult clinics. That transition from paediatric to adult services has been highlighted in a number of briefings. It seems to be genuinely counterproductive that support for self-management comes to an end when people move to adult services, with many people being forced to attend anticoagulation clinics for testing. Having been in control and able to manage their condition, they lose that empowerment and must cede control to others. I hope that we will consider the issue seriously.
The results of the Cochrane review suggested that self-monitoring or self-management can improve the quality of anticoagulation therapy, although I recognise that it is not for every patient. For some patients, it is not feasible, so we need to identify and educate suitable patients. However, there is an opportunity to do more and to do it safely and effectively.
The results are good. Nanette Milne touched on them, and I will rehearse some of them. After starting self-management, 80 per cent of “poorly controlled” patients move into the “well controlled” category. That alone convinces me that we need to do more, but the figures are equally convincing when we consider the improvements for patients in monetary terms. Across the UK, a 5 per cent improvement would prevent 500 strokes and save the NHS a minimum of £6 million, of which approximately £600,000 would be in Scotland.
Other results suggest that, with 6,354 patients self-managing in NHS Scotland rather than being on standard care, over five years, 360 would avoid strokes and embolisms, 186 would avoid death and the total savings would be extraordinary, at almost £3 million out of the current cost of £11 million. I therefore recommend the approach to the minister, particularly when we consider that the cost for clinics could reduce from almost £7 million to £500,000 and that test strips for prevention are a mere £67 per patient for one year.
Self-management makes sense. It is good for budgets, which should interest us all, and it is good for patients, because we give them power and control. The Scottish Government’s policy direction is towards self-management, so why not for anticoagulation therapy?
17:19
As other members have done, I congratulate Nanette Milne on securing time for what has been a relatively short debate.
As members will be aware, we set out in our quality strategy in 2010 our clear commitment to ensure that patients receive safe, effective and person-centred care, which goes for every person, every time that they make use of our NHS.
As part of that commitment, we have supported people with long-term conditions to be active in their care. Our 2020 strategy and our quality strategy are complemented by “Gaun Yersel! The Self Management Strategy for Long Term Conditions in Scotland”, which was written by people with long-term conditions. Since its adoption, we have provided £11.75 million through the self-management fund to support people to manage their long-term conditions in the community.
In responding to the debate, I must address some of the assumptions that are set out in the motion, which may be slightly confused. First, it is important to recognise that there is a difference between self-testing and self-management. They are not the same thing. Secondly, self-testing is not the best option for the majority of warfarin patients, who are elderly and may have cognitive impairments.
In Scotland, around 80,000 people are currently prescribed warfarin for the treatment of conditions such as irregular heartbeat and deep vein thrombosis and for the management of mechanical heart devices. Making the blood clot less easily prevents blood clots from forming and leading to strokes, heart attacks and pulmonary embolisms. However, taking too much warfarin can cause death and disability due to internal bleeding, especially in the brain. Therefore, it is vital to get the right balance for each of those patients, but it is also a challenge.
I will address some of the points that Nanette Milne raised and to which Jackie Baillie also referred, as they are set out in the motion.
The motion suggests that there has been a lack of progress on self-testing and self-monitoring compared with England and other parts of Europe. I am not entirely sure on what basis that conclusion has been drawn. The only source of data regarding England that we have been able to identify is from the company that produces one of the branded testing kits and machines. Moreover, we must be careful with European comparisons because the provision of primary care is fundamentally different across different countries in Europe.
The motion also suggests that paediatric patients, or their parents, supported by the national cardiac service at Yorkhill self-manage. That is not the case. They self-test and forward their results to a qualified haematology nurse who prescribes the medicine dosage, which is sent to the patient by secure text. Then, when they move on to the adult service, they have one meeting with the adult team, after which the same arrangement continues.
The motion also suggests that there is clear evidence that self-management of anticoagulation therapy provides patients with better health outcomes. In fact, it is worth considering the NICE guidance on the matter—the draft standards that it published in February this year regarding self-testing. They suggest that self-testing is more clinically effective than the usual approach of taking blood, sending it off to a laboratory and advising patients by phone of the dose that they should take. That is self-testing rather than self-management.
I absolutely accept that there is a difference between the two, and I made that very clear in the debate that I had a few years back. I also accept what the minister says about the children from Yorkhill self-testing rather than self-managing but, when those children transit from paediatric to adult services, why should they hand back their monitors so that they no longer self-test?
I mentioned that they have an interview after they move into the adult service and then continue with the arrangement that was in place, so I think that there may have been an issue with some of the information on how services are delivered that members have been provided with.
Some members may also be aware of the paper that one of the suppliers of self-testing technology sponsored—the York study. Like the NICE study, the York paper is based on assumptions, including on the average age of those on warfarin. The model assumes that the average age is 65 years. However, in Scotland, 77 per cent of those on warfarin are older than that and 28 per cent are older than 75. Those are important factors that need to be taken into consideration in any self-testing or self-management process that is introduced.
Nanette Milne suggested that we should have a national service across the country. Again, I am not persuaded that that is the approach to take. I am sure that she will recognise that boards have a responsibility to have in place local protocols for the delivery of service, making use of the SIGN guidelines but adapting the approach to the boards’ local circumstances. That seems to me to be a much more appropriate way in which to take forward this type of issue.
Members will also be aware that we have made significant investment in our patient safety programme, which has been extended to primary care. It pays particular attention to adopting best practice in how we can systematically make the prescription of warfarin safer. It has already been adopted in eight of our boards: NHS Ayrshire and Arran; NHS Borders; NHS Dumfries and Galloway; NHS Fife; NHS Forth Valley; NHS Highland; NHS Lothian; and NHS Grampian.
Nanette Milne also referred to the experience with the GP practice in Largs. It is worth keeping in mind that the GP practice that was highlighted in that pilot had a significant amount of resource provided to it for the purpose of the pilot. In fact, it had one GP, three practice nurses, two healthcare assistants and an administrator in its anticoagulant team. That is a model that would simply not be sustainable if it were rolled out across the country.
I hope that members recognise that we understand that changes are taking place in this area. We are keen to ensure that patients who are receiving anticoagulant medication in Scotland receive the best possible care. However, the method and approach that we take should be one that is safe and effective and is appropriate to the circumstances of each individual patient.
Meeting closed at 17:27.Previous
Decision Time